‘I thought I had IBS – now an ovarian tumour may cost me my dream of having children’

Lucy Rudd, 29, began experiencing pain during sex, irregular bleeding, and IBS-like symptoms in January 2023

Lucy had surgery to remove one ovary and fallopian tube (Collect/PA Real Life)

A woman who thought she had irritable bowel syndrome (IBS) but was diagnosed with an ovarian tumour and told she may not be able to have children as a result now feels like a “sitting duck” waiting for the growth to return.

Lucy Rudd, 29, a biomedical scientist, who lives in Cumbria with her fiance John Atkinson, 34, began experiencing pain during sex, irregular bleeding, and IBS-like symptoms in January 2023.

By April of the same year, she developed a lump on her abdomen, so visited the doctors.

Post surgery, she was diagnosed with a mucinous borderline tumour which, according to Cancer Research UK, is when abnormal cells form in the tissue covering the ovary – a tumour which is not made of cancer cells but generally does hold a low risk of becoming cancerous or returning. For Lucy, the chances of recurrence are 25% in the first two years post-surgery.

The tumour on the left ovary was 20cm in size and weighed 1.6kg, when Lucy herself only weighs 50kg, but in an effort to maintain her fertility she refused a hysterectomy and instead had surgery to remove one ovary and fallopian tube – but this still means her chances of conceiving are now very low as her remaining ovary is not functioning as it should.

At the time, she and her fiance had only just started talking about having children, and were planning on getting married in 2025 – but since her diagnosis, they have moved the wedding to March 2024 and started looking at fertility treatments.

Lucy said she often feels like she’s “drowning” in her feelings, recalling getting home from her surgery and seeing the “hideous scar right down (her) middle” and it being a “constant reminder” of what she has lost and “the baby (she) might not get to carry”.

Lucy Rudd, 29, a biomedical scientist, who lives in Cumbria with her fiance John Atkinson, 34, began experiencing pain during sex, irregular bleeding, and IBS-like symptoms in January 2023. (Collect/PA Real Life)

Lucy told PA Real Life: “I felt and still feel like a sitting duck at the fear of recurrence, and I am mourning a loss.

“While the surgery left my right ovary to conserve my fertility, it has not been as we’d hoped and conceiving has been given five to 10% chance of success.

“I felt like I was drowning, I was angry and feeling guilty for my feelings – I think everyone expects to choose when you have a baby and if you want one, so I always thought, the choice is there when I’m ready.

“It’s drilled into us from a young age, to use protection and we’re so fertile, when that actually isn’t the case for a lot of people.

“I didn’t realise how much I want mine and John’s baby until I was told actually you might not get to have one – it shocked and scared me how desperate I felt, and feel, for our baby.

“I think that’s been part of my guilt that it wasn’t a life dream until I got told I might not have the choice, and it’s looking like we might not get our baby.”

Lucy got her first warning signs for a tumour in January 2023, when she began spotting outside of her period, experiencing pain during sex, and could feel a lump in her stomach.

Initially, Lucy put it down to having a copper coil contraceptive or IBS, but by April, her symptoms got worse.

She said: “Passing urine became painful and so frequent I was getting up multiple times during the night.

“I was also suffering from frequent acid reflux and night sweats.

Lucy asked for fertility-sparing surgery, for them to remove as little as possible, but she was warned she may have to have further surgery depending on her histology report (Collect/PA Real Life)

“When I felt this lump in my stomach it quickly changed into a pelvic mass so I decided I’d visit the GP.”

At her first appointment, she was asked to do a pregnancy test, which came back negative, and a CA-125 blood test – a non-specific ovarian tumour marker test.

She said: “I never realised that there wasn’t a screening programme for ovarian cancer, and that the CA-125 blood test along with the ultrasound, CT and MRI can only indicate not confirm.

“My CA-125 result came back high and from then I was worried.

“I was told if these scans show the mass to look complex I’d be referred to the specialist hospital for surgery.”

Her next appointment, where she was supposed to be given information about next steps, made her worry even more.

She said: “We were only in the room for about 10 minutes, and they told me and John that I had an urgent appointment tomorrow, and I can take as many family members as I want with me.

“They gave us a bunch of leaflets for ovarian cancer and Macmillan, and that was it.

“I was a bit in shock – we were just walking out the hospital and I said to John, ‘Well, this doesn’t look good’.”

The next day the hospital prepared Lucy for a diagnosis of stage 3 ovarian cancer, and it was recommended that she have a full hysterectomy.

“John has a little girl but we don’t have any children together and it’s something we’ve only just started speaking about,” Lucy explained.

“At the time, we were supposed to get married in November 2025, and we had said we were going to maybe start trying a few years after that.

“I just couldn’t stop crying because they said I might struggle to have kids in the future.”

Lucy asked for fertility-sparing surgery, for them to remove as little as possible, but she was warned she may have to have further surgery depending on her histology report.

The surgery was successful – it was less complex than they anticipated from the scans and the tumour was confined and not stuck to other organs.

But Lucy lost one ovary and a fallopian tube, meaning her chances of conceiving are very low.

“The size of the tumour had been putting pressure on my other organs which had led to some of my symptoms,” Lucy said.

“The thickening of my peritoneum picked up on the scans, which they thought was the cancer spreading, was put down to inflammation due to the tumour being so big.

“But, when I came home and saw myself in the mirror, I burst out crying at the hideous scar right down my middle – a constant reminder of what I have lost, the surgery still to come and the baby I might not get to carry.”

A week later, Lucy was told the tumour was stage one mucinous borderline.

She said: “I was kind of relieved because it wasn’t cancer, but it basically means it could turn into cancer so it’s so worrying.

“Three millimetres of my tumour was actually malignant… and I think about how if I was a bigger person and didn’t notice that lump, my tumour was growing up squashing my organs, it could have gone on for longer and crossed over to that threshold of being a cancer.

“I’m so fortunate to have caught it at the stage I did.”

She is currently having regular check-up appointments to check her tumour has not spread and turned cancerous.

Lucy and her partner have since been to a fertility centre and discovered her chances of conceiving and chance of successful IVF are five to 10%.

She explained: “We went to see if we could freeze embryos because they basically told me they still recommend a full hysterectomy sooner rather than later because the chances of a recurrence are out there.

“It could be in six months, it could be in five years, I just feel like my ovary is a ticking time bomb, and I’ve basically been told that I need to have kids now, or never.”

On what she would say to others experiencing a similar health scare, she said: “I am trying to process what I’ve gone through in such a short space of time and want others to know, it’s okay to feel exactly how you are feeling and you should not feel guilty.

“You still had a tumour with potential removed, you’re still mourning a loss, scans are still ongoing and your feelings are still valid, it’s okay to cry every day.”

Looking back on her experience, she said: “I didn’t know that unlike breast cancer and cervical cancer there isn’t a screening tool, and I didn’t know the symptoms, nor did my friends.

“I believe that if we know the symptoms – persistent bloating, abdominal pain, needing to wee more often and feeling full quickly, acid reflux – women might go to see their GP with their concerns.

“I’d encourage concerned women to say they are worried about cancer, and if in doubt ask for a CA-125 blood test – but remember this is a starter, it doesn’t necessarily mean you have cancer.”

For more information, visit: targetovariancancer.org.uk